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    Should You Be Concerned About The Privacy Of Your DNA Test Results?


    DNA testing is now more popular than ever as people rush to get home testing kits to learn more about their heritage, ethnicity, health, or connect with living relatives. Along with a wave of popularity, genetic screening kits are also the subject of some concern. Many wonder what their data is being used for and how they can best protect it. 

    Data confidentiality is gaining more attention after the well-known testing company 23andMe faced privacy concerns over their handling of test results. The issue of 23andMe selling data was investigated by the Federal Trade Commission, which ended with the company having to make adjustments to its policies.

    If you’re considering taking a genetic test to discover more about yourself, you should also do some research on how best to protect your most private data. Keep reading to learn what genetic companies do with data, what’s the law, and how you can keep your information confidential.

    What Can DNA Testing Companies Do With My Results?

    When you submit a sample of your DNA, you’re giving some of the most private information about yourself to someone else. Despite being major companies, there are concerns surrounding 23andme privacy and Ancestry DNA privacy policies. 

    Genetic testing has been around for decades. However, thanks to affordable direct-to-consumer at-home testing, this industry is breaking new ground.

    Due to this, the related legal policies that govern the private use of genetic data are young or still in development. 

    One of the biggest concerns with DNA test privacy is that an organization can sell your information to a third party.

    These third parties range from universities and research institutions to major drug corporations. 

    Research is the main reason why companies buy genetic information. People’s data can assist scientists in understanding the causes of different genetic diseases and conditions.

    Ultimately the hope is that this research will lead to improved treatments and even curing diseases. 

    That said, it’s impossible to know for sure how your information will be used. Many people are simply uncomfortable with this fact. 

    What Does The Law Say About DNA Data Privacy?

    Genetic home-testing kits occur outside of a healthcare setting, so privacy-related matters are different than if you were to get tested at a doctor’s office.

    For these kits, there’s a low level of data protection. The body tasked with monitoring and policing privacy practices for DNA testing is the Federal Trade Commission.

    However, there are no concrete laws pertaining specifically to at-home screening.

    Some states have recently taken action and passed genetic confidentiality laws in early 2020. These laws vary in the protection they offer, and the applications can be broad.

    You can look up what your state’s specific policies are for more information. Keep in mind, those in Europe have other legal governing standards like GDPR that offer some protection. In short, the kind of data protection you deserve may depend on where you’re located.

    What Can I Do To Make Sure My DNA Results Are Being Kept Private?

    So how can you find out what will happen with your data? Companies are legally required to provide a privacy policy. This fine print will state what data the company intends to collect from your DNA sample, how they intend to use it, and what control you’ll have over your information once your sample is submitted. 

    Here are some important actions you can take to keep your DNA test results private and ease your DNA privacy concerns:

    • Read the privacy policy. These can be long and heavy in legal jargon, so you may want to ask for help or reach out to the company for further information
    • Research companies carefully. Bigger, more reputable brands (like 23andMe and Ancestry) tend to be held more accountable than smaller, lesser-known companies
    • Set a reminder. Some companies will allow you to request to delete your data altogether. You may want to do this as soon as you get your results, so put a note on your calendar to remember to do so
    • Consider downloading your raw DNA. This is genetic information that you can give to specialists in the future without having to retest 
    • Remember, you’re in control. Just because you wish to know more about your genetic information doesn’t mean you should sacrifice your privacy. Take your time to research and find the right company for your comfort level

    Bottom Line

    As genetic testing gains more attention, companies will be forced to tighten their privacy policies and issue more transparent and understandable explanations to consumers. 

    The DNA industry can yield incredible insights from predispositions to diseases to connections with living relatives. To ensure you enjoy the safest DNA journey possible, double-check policies, and make sure you’re comfortable and secure with your decision.